OK......so we've been putting this off for quite some time, but we finally did it! We started a blog to keep you up to date on our family and Caroline's journey with CHD! We wanted to start by giving everyone some background into where we've been and what we've been up to for the past nine months!
As many of you already know, Caroline was born last fall with a congenital heart defect called a VSD (ventricular septal defect). Basically, there is a hole in the wall that separates the two ventricles of her heart. The hole between the ventricles causes already oxygenated blood to back flow into the right side of the heart and recirculate into her lungs, making her circulatory system extremely inefficient. In short, her heart works very hard to pump blood through her body due to the hole. The inefficiency causes Caroline to tire easily and made feeding extremely challenging. To make matters worse, Caroline contracted RSV (respiratory syncytial virus) when she was 8 weeks old. RSV is a common childhood illness that virtually every child in America contracts before the age of 2. It usually manifests itself as a mild-moderate upper respiratory infection for most healthy kids, unfortunately, if you are cardiac or pulmonary compromised, it can be particularly dangerous and even fatal. The insult of the virus caused Caroline's heart to fail and she was hospitalized following a routine cardiology visit on December 22nd, 2008. We spent 10 nights in Seattle Children's Hospital over Christmas last December. Unfortunately, the combination of the virus, heart failure, and previous difficulty feeding, Caroline's poor body couldn't keep up with the work of eating. A nasogastric feeding tube was placed while we were in the hospital to give her a chance to rest and still receive the calories and nutrients she needed to regain her strength and recover from being sick.
We spent a long winter nursing Caroline back to health, but unfortunately, oral eating never recovered. A permanent feeding tube called a G-tube was surgically placed in Caroline's stomach this spring. Now that she has recovered from the RSV and heart failure and she has a permanent source of nutrition, the cardiologists are ready to repair the hole in Caroline's heart. We are headed back to Seattle Children's for the third time this year. Caroline's surgery is scheduled for July 29th. Caroline's surgeon will patch the hole in her heart with a special piece of plastic, essentially sealing the hole and giving Caroline a near perfect heart! We plan to be in the hospital for about a week and we are very much looking forward to bringing Caroline home with a healthy heart. More on Caroline's heart defect and the upcoming surgery in future posts. For now, we'll leave you with knowing that you'll have a place to check on our family and Caroline's progress through this new phase of our journey.